EDS and Surgery, freaking out!

Anhedonia2

Sorry this is likely the wrong area to post this in but I've just freaked myself out majorly and need some reassurance!

I have EDS and I'm having surgery in a few weeks time, I've been trying to stay off Dr Google because I have a tendancy to spiral but my pre-op is tomorrow and it's scaring me, so I searched to try and understand what they may ask and I'm just seeing things saying that surgery is more complex and risky on people with EDS and should only ever be done as a last resort because it's riskier!

At my last appointment I mentioned having EDS to the consultant and he said it makes no difference and is unrelated so not needing to be known about??

Rachel_Scope

Sorry you've fallen into the Dr Google trap @Anhedonia2! I think we all do it and it always makes things out to be worse than they are. If your consultant knows about your EDS and said it doesn't make a difference I would just go along with that. Your consultant will have assessed the risks and if there was anything to worry about I'm certain they would have let you know.

What can you do today to try and relax?

chiarieds

Hi @Anhedonia2 - I have the hypermobile type of EDS. Surgery if you have EDS 'may' be more complex, but it would depend on the type of EDS you have; the riskier part would only be if you have the vascular type of EDS.

One of the issues with EDS is that there can be poor wound healing, but other than that the way a surgery is done would likely be the same whether a patient had EDS or not. If you need an incision, say again that you have EDS. When I fractured my hip nearly 10 years ago the orthopaedic consultant absolutely took this on board & made my incision (I needed a pin & plate inserted) as short as possible. Be guided by your consultants, but don't be afraid to ask questions either!

Kindly let us all know how you get on tomorrow.

Anhedonia2

Thank you @chiarieds, I don't think I was ever told what type of EDS I have but I am hypermobile so I assume it is that. Would it be in my records?

My appointment went well, the anesthetist was more concerned about EDS than the consultant, he said it needs more careful management with anesthetic as some people with EDS can be resistent and I've not had anesthetic before to know.

It hasn't done anything to calm my nerves and has given me another thing to worry about but they were all as reassuring as they could be.

chiarieds

Hi @Anhedonia2 - certainly many EDS patients report poor results with local anaesthesia & epidurals. General anaesthesia, so long as the surgeon is aware of EDS, shouldn't be problematic.

With local anaesthesia my penultimate dentist found one that continues to be completely effective, & when I had to have a small area removed from the roof of my mouth for biopsy, then I was given extra injections & the whole area was actually removed. This is all so much better than the ineffectual locals I'd previously had before I found out I had EDS & why these had been problematic! Not everyone with EDS will have this problem however.

When I fractured my hip I went with the anaesthetist's recommendation to have a general anaesthetic instead, but this was more due to the fact that we have a family history of a neurological condition (Chiari 1 Malformation) which is associated with EDS in a few of us.

I think the main things is that your anaesthetist is aware that you have EDS & will take every precaution to ensure you are pain free & comfortable.

Anhedonia2

https://forum.scope.org.uk/discussion/comment/1127745#Comment_1127745

Thank you very much @chiarieds. I had a full hysterectomy and was kept in an extra few days.

I'm not sure if my EDS has impacted it, but they asid my blood loss was worse than they would normally expect and that I may find a slightly increased recovery time. They've told me strict bed rest but I'm feeling pretty miserable already, I find I get really stiff if I don't move regularly. Is that the same for you?

May I ask how you found out you had EDS and Chiari 1 Malformation?

chiarieds

Hi @Anhedonia2 - when my son had surgery at 14 months old to correct his talipes eqinovarus (both of his feet had been turned inwards from birth) they had difficult with controlling the bleeding, but I didn't know he had EDS at the time.

I definitely get stiff if I don't keep moving!

Sadly we'd lost our youngest daughter when only 23 months old (she'd had breathing problems from birth; needed a tracheostomy at 1 week old & it was later found both of her vocal cords were paralysed). When my eldest daughter was 19 years old she asked me to work out why her little sister had died. I'm a long retired physio which then helped me put all of the pieces together through research. It was fairly easy to work out we likely had hEDS, but then I thought our youngest daughter had also likely had Chiari 1 Malformation, & the 2 might be associated in some with EDS.

A New York neurosurgeon I'd contacted said that he'd just found some of his Chiari 1 Malformation also had EDS, & because we'd found the same thing at the same time he kept me in the loop.

My son & I were the first in our family to get a diagnosis of EDS confirmed, & then my eldest daughter.

The New York neurosurgeon said that our youngest daughter most likely had Chiari 1 Malformation, which was a little later also thought the most likely by her Gt. Ormond St. ENT surgeon when I spoke to him.

The likelihood that Chiari 1 Malformation & EDS were not associated was a little later estimated by an American geneticist as just over 3 million to one; so there is an association in (hopefully a very small of percentage of) some of us with EDS.

Specialists on the American Syringomyelia & Chiari Association Project (ASAP) regularly talk about EDS with their conferences (including the New York neurosurgeon who helped me): https://asap.org/